Sisterhood of the Extra Chromosome

August 6th, 2010

I started out with just two older sisters.  But over the past months, God has been adding more of you to my life.  Older sisters who are ahead of me on this path and who love the Lord.  I feel compelled to let you write this post.

“When I told the family this morning [about Verity], R’s reply was, ‘cool.’  Having a brother with Down syndrome has increased all of our kids’ compassion and acceptance of others and they love babies with Down syndrome! Here is a verse that God gave me after J was born, a very familiar one, but spoke to my heart.  ‘You are worthy, O Lord, to receive glory & honor & power, for You have created all things, & for Your pleasure they are & were created.”  Rev. 4:11.  J brings pleasure to God, amazing, isn’t it?  Knowing J’s heart, I believe that he brings God more pleasure than I do, I’m so full of self.”

I see myself as one of your baby sisters who is stumbling around learning to sit and crawl (and hopefully stand and walk someday).  And you all have been willing to stand nearby and watch, encourage, counsel, and teach me.

“You are walking a path we have walked and are walking, only we are about 8 years ahead of you.  Our precious D has Down syndrome.  Before D was born, we discovered through a sonogram and echo that she had complete AV Canal defect, hence the doctors told us it was very likely that she also had Down syndrome.  That was at week 28 of my pregnancy.    Those next 12 weeks were ones of seeking God, processing, researching, and waiting.  I carried her to full term, and she was born bouncy and healthy.  Her Apgar score at birth was 9, and she sucked well right from the start.  With having that time to prepare for her arrival, we were excited to have her join our family, and I have never wished to change her.

“I wanted to share more details of our journey so you know you’re not on this road alone.  We are a few strides ahead of you but are willing to reach back and hold your hand if we can.”

You have told me about the good the Lord has brought out of difficulty.

“I won’t say it’s always easy, but it’s not scary and strange like I feared. It’s completely natural and relatively uncomplicated. I feel so blessed to have her — my eyes and my heart have been opened exponentially. In some ways I don’t feel like I was truly living before. Life is bigger now – both in its beauty and its ugliness. Before she was born, I was more in love with the world than I had realized. My daughter makes me want more of God’s perfection and less of this world.”

You have been willing to be open with me about your own struggles and experiences, and helped me know what to expect.

“I will tell you about our S and hopefully come more alongside you for Verity that way.  Our S was diagnosed as probably having Down syndrome before she was born and had no disastrous heart defects found on the fetal echos, but her heart was at an 80 degree axis, and turned very far around and it was clear that there was something going on that would likely be found upon her birth.

“The surgery is different I have no doubt from what Verity will have to have.  And yet, I don’t know if different matters that much after a certain point when life and death are both seemingly equal options knowing God is on our side.  They may live if you do it, they won’t live if you don’t.  Makes it the hardest easy choice you will ever have to make.”

You have helped to lift our load by your uncritical understanding that we are learning our lessons in real time, right now, and don’t have it all figured out yet.  You know that I am not strong, or amazing, because you have experienced God’s strength in your weakness, too.

“It is really hard, at first.  It is heartbreaking to know that they will suffer pain.  And as heartbreaking to know that they will not always be accepted by others.  It is hard to know they will struggle to do the things that most babies do naturally.
But it does get easier.  Not right away, and not all at once.  But God does heal broken hearts.

Hugs and prayers,


Are you going to be home today?  I would like to come over.

I read your blog this morning, I could have written it myself 15 years ago, and my heart goes out to you. I watched my tiny little boy sweat and try to breathe, worked so hard to feed him, tried to get him as big as I could for his heart surgery. It is so hard to go through, I remember very vividly feeling like feeding him was a full-time job and he was my first, so no other children to care for. I’ll be praying special prayers for you, too, for whatever you need to get through the days and nights. It feels like it will be forever when you are going through it, but it does get easier. Feel free to write to me whenever you need or want to.”

You have given me a glimpse of the joy that we have ahead of us, and shown me the amazing privilege it is to receive and love a child most of the world regards as worthless.

“We are so happy for you!  I have also thought those little almond shaped eyes are so exquisite…just wait ’till they form tiny crescent moons with a good belly laugh!  Irresistible!”

“I can’t say what Verity will be like as she grows older, but I will tell you that I remember the stage you are in seeming to last forever when we were in it. Now my 15 year old son can eat more than his dad, loves to sing songs about Jesus at the top of his lungs, and hugs me every day and calls me “the best mother” no matter what kind of day we have had.   He is such a blessing.”

These are just a sampling.  Many of your words are saved in the comments to this blog.  Some are just written on my heart.

Am I not a blessed younger sister?  I hope someday to grow up and be one of you.  I love you all!

Share it!

6 Responses to “Sisterhood of the Extra Chromosome”

  1. Marilyn Osborn says:

    Wow!  I was so blessed to read that….for so many, many reasons.  Praying for you tonight…M

  2. stephanie says:

    it’s a wonderful place here, in Blogland. i have thanked God repeatedly for guiding me here when I needed the support so desperately. it is a sisterhood, you put it perfectly. It’s a place filled with people who just get it, who know what your days are like, what your thoughts are like, and how amazing this journey we are on really is. I’m so glad you are here to share Verity with us. Everyone here brings something different with them. i don’t believe there is a question or issue pertaining to Ds that couldn’t be answered or at least some sound advice given.

  3. Shari~hotfudgecustard says:

    Wow!  Thank you for sharing these comments.  I have been moved to tears, not “knowing” exactly what you and these other sisters have experienced, but trying to understand all the same.  I feel sure that you will be an older sister to someone else soon, helping her along the path.  This blog is already such a help to listeners about the journey a mom goest through when caring for a baby with Ds.

    Bless you, today.  And praying that Verity will nurse, nurse, nurse!  : )

  4. Joy Horton says:

    Ditto Shari! (((((((((hugs))))))))))

  5. Susanna, I’m THRILLED that you have these older sisters.  Just as I am blessed to have you as my older sister, gently guiding me through my motherhood journey, you have these wonderful blessings to help you along too.  And I’m SURE God will use you for another little sister one day.

  6. Amy says:

    I am not sure if you see comments on these from so long ago. My daughter was born at the end of March. She has VSD. She is 6 weeks old right now. A good friend from church sent me a link to your blog and I have been reading it while pumping. We will see the cardiologist sometime in the next 2-6 weeks. I am scared but I am so thankful for your blog and all the information you have put into it. God has blessed us in so many ways in regards to our daughters health. I know he will give me the strength I need no matter what may come. Thank you so much for sharing and encouraging others with your story.

RSS feed for comments on this post. And trackBack URL.

Leave a Reply